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Bioethics ISSN 0269-9702 (print); 1467-8519 (online) Volume 28 Number 6 2014 pp 275–283

doi:10.1111/bioe.12096

TRUST AND THE DUTY OF ORGAN DONATION BEN ALMASSI

Keywords organ donation, organ procurement, trust

ABSTRACT Several recent publications in biomedical ethics argue that organ donation is generally morally obligatory and failure to do so is morally indefensible. Arguments for this moral conclusion tend to be of two kinds: arguments from fairness and arguments from easy rescue. While I agree that many of us have a duty to donate, in this article I criticize these arguments for a general duty of organ donation and their application to organ procurement policy. My concern is that these arguments neglect the role that trust plays in contemporary organ transplant policies and in differential rational attitudes toward donation. Recognizing donation as an achievement of trust, and acknowledging the warrant of many people’s rational distrust or withheld trust in medicine, I argue, should have significant implications for the ethics of organ procurement.

1. INTRODUCTION Organ failure reminds us that we are interdependent and embodied beings. It illustrates vividly two simple, powerful truths: that we must rely on each other, and we can rely on each other. In successful transplantations, recipients, donors, surgeons and other medical professionals accomplish together what none can do alone. This is an achievement of scientific knowledge and surgical skill, but also of trust, which can tend to be overlooked when things go well: as Baier observes, an atmosphere of trust can be easier to perceive when polluted than clear.1 A social-epistemic corollary of this is that it can be easy for those who are privileged to enjoy rational trust to discount its fragile nature, and hard to understand why those people we justifiably consider trustworthy might justifiably be regarded differently by others. Achievements of trust are cast in sharp relief by contrast with exploitation or absence of trust. That organ donation exists in an atmosphere of trust becomes apparent when we attend to its counterpart, organ scarcity. Thousands of lives are saved and improved via transplantation each year and millions have agreed to live or cadaveric organ donations; meanwhile, millions also 1

A. Baier. Trust and antitrust. Ethics 1986; 96: 231–260, p. 234.

refrain from agreeing to donate their organs in life or death and thousands of lives are lost or seriously restricted by their organ failure. Organ scarcity is persistent yet not inevitable. What sort of ethical response does this striking fact demand: do we have a duty to donate? Several recent publications in bioethics affirm that organ donation is a general moral obligation and that failure to do so is morally indefensible. Broadly speaking, arguments for this moral conclusion tend to be of two kinds: arguments from fairness and arguments from easy rescue. This work advocating obligatory donation has much to recommend it, proceeding through careful moral reasoning and genuine concern for vulnerable persons. My concern is that arguments from easy rescue and fairness neglect to consider how trust undergirds contemporary organ policies and differential rational attitudes toward them. In this article, I evaluate these two kinds of arguments for a general moral duty of organ donation; for each I find that a general duty to donate fails to hold once implicit premises regarding rational medical trust and distrust are acknowledged. I consider some possible defenses of obligatory donation against this trust-based critique and argue that none saves the general moral obligation antecedent to the urgent moral priority of repairing lost trust. Cultivating more diverse trustworthiness of healthcare systems should be recognized as central

Address for correspondence: Dr. Ben Almassi, Governors State University, 1 University Parkway, University Park Illinois 60484, USA. Email: [email protected] Conflict of interest statement: No conflicts declared © 2014 John Wiley & Sons Ltd

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Ben Almassi should be suspect. If everyone could decide they wanted a kidney should they develop end stage renal failure and everyone could decide they would not donate a kidney themselves, this would contradict the interests of the ‘organ takers’ because no one would receive a kidney.4

rather than ancillary or irrelevant to the ethics of organ donation.

2. ARGUMENTS FROM FAIRNESS Some arguments ground the moral duty of organ donation in fairness considerations. Those who refrain from agreeing to donate in life or death are criticized as ‘free riders’ failing to do their part, making moral exceptions of themselves.2 This moral critique is clearest when levied against those individuals willing to participate in organ transplants as recipients but not as live or deceased donors: those described as organ ‘takers’ but not ‘givers’.3 This critique extends not only to those who have received an organ but also to those who would accept an organ should they need it, while not faulting those physically unable to donate in death who would have donated willingly if they had been able. In advocating for a transplantation policy giving partial priority in receiving organs to those already committed to donating in death, Steinberg articulates three main criticisms of existing US organ policy. The first concerns the persistent issue of organ scarcity; the second concerns contemporary overdependence on live donors. Steinberg’s third critique of current organ policy is one he shares with Jarvis: that it does not discourage, let alone eliminate, free-riding by those who are organ takers but not givers. Steinberg offers this argument from fairness for the moral failure of organ free-riding: An ‘organ taker’ should recognize that other persons are also entitled to moral respect and might have a valid need for a donated kidney [. . .] If it is morally valuable for me to receive a kidney, objectivity requires that the donation of a kidney to someone else also be considered morally valuable. The ‘organ taker’ must decide whether they would be willing to perform the same morally valuable act as they would want and accept from others and become an ‘organ giver’ by agreeing to donate their kidneys when they die. An ethical position is contaminated by subjectivity if it applied only to oneself and not to other similarly situated people. There is also a practical contradiction in adopting the position that people can choose to be ‘organ takers’ with no obligation to also be ‘organ givers.’ An ethical position that cannot be generalized

Jarvis addresses the free-rider problem by arguing that only those agreeing to donate in death should be permitted to receive transplants.5 Eaton argues that as a matter of desert in rationing, those willing to give (called ‘generous recipients’) may be prioritized over free-riders (called ‘selfish recipients’), on the grounds that ‘where a limited resource must be allotted to someone, it seems reasonable that the free-rider should be penalised for his/her uncharitable views concerning his/her potential contribution’.6 The Israeli organ allocation procedure implemented in 2008 now gives partial priority to those who have signed organ donation cards as well as to their family members, a policy that supporters defend by appeal to both utility and fairness considerations.7 Steinberg, Jarvis, and Eaton all exempt from criticism those opting out of transplants: for example, a Jehovah’s Witness who refrains from organ giving and taking is not a free rider. But not all arguments from fairness draw this moral distinction. Consider Altman’s recent Kantian argument for presumed consent procurement policies. Even as respect for patient autonomy is a ‘Kantian concept’ central to medical and ethics today, he observes, there is a tension between autonomy as Kant understood it (in Altman’s words, ‘freedom is maintained only when a person’s choices are morally and legally constrained’) and as it is often understood in bioethics as ‘being able to do whatever one wants to do’.8 Altman envisions a Kantian ethic of organ donation that presents a welcome challenge to popular attitudes that prioritize limitlessness over safeguarding dignity. A Kantian case for presumed consent in cadaveric organ donation may be surprising. Those who view presumed consent models as morally objectionable for failing to respect autonomy might have considered Kantian ethicists to be their especially stalwart allies in opposition. But Altman rejects this reading. Refusing to donate one’s cadaveric organs is morally wrong on Kantian grounds, Altman argues: 4

Ibid: 6. Jarvis, op. cit. note 2, p. 202. 6 Eaton, op. cit. note 2, p. 167. 7 Cf. J. Lavee, T. Ashkenazi, G. Gurman & D. Steinberg. A new law for allocation of donor organs in Israel. Lancet 2010; 375: 1131–1133; D. Ofri. In Israel, a new approach to organ donation. New York Times 2012: February 16; M. Quigley, L. Wright & V. Ravitsky. Organ donation and priority points in Israel: An ethical analysis. Transplantation 2012; 93(10): 970–973. 8 M. Altman. Kant and applied ethics: The uses and limits of Kant’s practical philosophy. Malden MA: Wiley-Blackwell; 2011. p. 91. 5

2

Cf. R. Jarvis. Join the club: A modest proposal to increase availability of donor organs. J Med Ethics 1995; 21: 199–204; S. Eaton. The subtle politics of organ donation: A proposal. J Med Ethics 1998; 24(3): 166– 170; D. Steinberg. An ‘opting in’ paradigm for kidney transplantation. Amn J Bioeth 2004; 4(4): 4–14. For a response to Steinberg’s opt-in proposal especially relevant to organ donation and trust, cf. S. Goering & A. Dula. Reasonable people, double jeopardy, and justice. Am Jo Bioeth 2004: 4(4): 37–39. 3 Steinberg op. cit. note 2: p. 6.

© 2014 John Wiley & Sons Ltd

Trust and the Duty of Organ Donation Although we are free to determine what we will do, it would be irrational and wrong not to donate. Were I to universalize the maxim of not donating, then I would be thwarting my own capacity to set and pursue ends – indeed, my own life – were I to have an illness that causes organ failure. No one would donate, so there would be no organs to transplant into me. By willing such a world, I would undermine my own activity, a contradiction of the will.9 It is not simply free-riding that violates the categorical imperative on this analysis. Those opting out of organ transplants entirely are no less guilty of a contradiction of the will, as they too thwart their capacities to set and pursue ends. ‘Because we ought to help others to advance their ends by (among other things) supporting their health’, Altman concludes, ‘one clear duty we seem to have is to donate organs, when we die, to those who are in need of transplants’.10 If organ donation upon death is morally obligatory, does this mean Kantian bioethics entails that cadaveric organ donation should be legally compulsory? Altman resists this implication. As he sees it, ‘we are legally allowed to refuse to donate our organs, and we are obligated to respect others’ refusal, even though we are also morally obligated to act beneficently, to donate in order to advance others’ capacity to set and pursue ends’.11 Yet Kantian bioethics need not accept current policies that fail to encourage fulfillment of our moral obligation. On a Kantian conception of the law, we should advance laws that shape and promote our moral development without necessarily coercing us to do the right thing. Altman holds that presumed consent organ procurement policies fit this conception well, especially given comprehensive publicity and ample opportunities for people to opt out. Thus, ‘people would have the option to choose what happens to their bodies after death, just as they can choose what happens to their (other) property, but the law would be devised such that it encourages us to act in a way that is consistent with the value of rational agency’.12

3. ARGUMENTS FROM EASY RESCUE One approach to the argument from easy rescue is to apply Singer’s position on the ethics of famine relief to organ scarcity. Recall that Singer articulates two general principles of varying demandingness, either sufficient for an obligation of assistance: (i) ‘if it is in our power to prevent something bad from happening, without thereby 9 10 11 12

Ibid: 103. Ibid: 102–103. Ibid: 104. Ibid: 109.

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sacrificing anything of comparable moral importance, we ought, morally, to do it’ and (ii) ‘if it is in our power to prevent something very bad from happening, without thereby sacrificing anything morally significant, we ought, morally, to do it’.13 One can argue that each principle implies a moral obligation of organ donation in death, if not live donation. There have been several further iterations of this argument for organ donation as easy and so obligatory rescue.14 Hester observes uncontroversially that thousands of people suffer preventable deaths yearly due to organ failure; that saving lives is a good thing; and that modern transplant procedures are medically and morally defensible means of saving lives.15 Like Singer, Hester offers a guiding moral principle that he believes enjoys widespread overlapping consensus among moral theories and is applicable to the issue at hand: his basic assumption is that ‘we are obligated to do what we can to save seriously endangered lives when we can do so without risking anything of significant value to us’.16 Given the uncontroversial observations about organ transplantation, he concludes, ‘each of us has a moral obligation to relinquish our organs for transplantation on our deaths’.17 Hester explicitly advocates the moral importance of cadaveric over live donation: given morbidity rates live donation arguably risks something of real value, while donation in death demands no comparable risk. ‘Dead people have no embodied countervailing interests that could trump the vital interests of potential transplant patients.’18 He realizes that this contention conflicts with some religious faiths, but denies that religious opposition displaces the moral obligation. On beneficence and rescue, Nelson draws the lesson that ‘there is a strong presumption that refusing to save another person’s life, when doing so is virtually costless to the person in a position to act, is seriously wrong’.19 Furthermore, he argues, the moral implication of this lesson 13 P. Singer. Famine, affluence, and morality. Philos Public Aff 1972; 1(3): 229–243. 14 M. Hester. Why we must leave our organs to others. Am J Bioethics 2004; 6(4): 23–28; A. Spital & J. Taylor. Routine recovery of cadaveric organs for transplantation. Clin J Am Soc Nephrol 2007; 2(2): 300–303; A. Spital & J. Taylor. Routine recovery. Curr Opin Organ Transplant 2008; 13(2): 202–206; J. Nelson. Trust and transplants. Am J Bioeth 2005; 5(4): 26–28; J. Nelson. 2003. Hippocrates’ Maze. Lanham MD: Rowman & Littlefield; J. Nelson. Donation by default? Int J Fem Approaches Bioeth 2010; 3(1): 23–42; J. Nelson. Internal organs, integral selves, and good communities. Theor Med Bioeth 2011; 32(5): 289–300. Snyder also offers an especially well articulated argument from easy rescue, but resists the inference to a general moral duty: cf. J. Snyder. Easy rescues and organ transplantation. HEC Forum 2009; 21(1): 27–53. 15 Hester op. cit. note 14, pp. 24–25. 16 Ibid: 24. 17 Ibid: 26. 18 Ibid: 25. 19 Nelson 2003, op. cit. note 14, p. 119.

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for the duty of cadaveric organ donation seems straightforward, as ‘absent some consideration that makes allowing one’s organs to save the lives of others unusually burdensome, we all have a duty to take such steps as a readily available way to bring it about that our organs are provided to those in need, should we happen to die in the appropriate ways.’20 Nelson recognizes that some of us remain unwilling to embrace this moral claim, and he posits that this may be because we see giving organs to another as an intimate act. It is not unusual, after all, to think of one’s eyes, heart, lungs, skin, one’s body, as oneself, and so hard to see them as parts to be used beyond one’s life. Yet we need not understand our organs and ourselves this way, Nelson says; we can instead embrace our ‘metaphoric pregnability’.21 My organs so understood are not mine to give or keep as I like, but rather ‘communal goods, and hence as routinely retrievable’.22 On this alternate, preferable way of envisioning ourselves, Nelson argues, the duty to donate is clear. As with fairness arguments, arguments from easy rescue sometimes do double duty in bioethics: applied to establish a general individual moral duty to donate and also toward procurement policies regarding consent, retrieval, incentives and penalties. Consider for example Nelson’s observation on presumed consent and organ procurement: The ‘easy rescue’ approach also suggests that the focus on consent that characterizes so much discussion of organ-procurement strategy may be misplaced. Part of what it is to be encumbered with a moral responsibility is to find that your agency is not altogether at your own disposal, at least not in the same sense that it is when you face discretionary choices.23 As we move to critically engage these arguments, let us be mindful of how inferences are drawn from claims about individual moral obligations to policy implications.

4. TRUST IN HEALTH CARE Trust can be a powerful resource for cooperative enterprise; but accompanying this power is vulnerability. As Baier puts it, ‘One leaves others the opportunity to harm one when one trusts, and also shows one’s confidence that they will not take it.’24 Specifically, trust as Baier characterizes it means more than simply prediction of or reliance on someone’s steady habits, but reliance on that person’s competence and good will toward oneself and

one’s objects of trust.25 Govier similarly regards reliance on good will as constitutive of trust. Trust is not faith, she argues, but based on background beliefs, evidence, and experience. She models rational trust along two dimensions: a trusted person’s motivation (including their intentions) and competence (their ability to do what’s needed).26 Jones’s characterization of trust as an affective attitude also owes a debt to Baier. On her model, trust is ‘an attitude of optimism that the good will and competence of another will extend to cover the domain of our interaction with her, together with the expectation that the trusted will be directly and favorably moved by the thought that we are counting on her’.27 Trust for Jones is not so much trusting-with as it is trusting-when: that is, trust concerning good will and competence toward our interactions with them. Hardin agrees with Baier, Govier, and Jones on the basic idea that ‘to say we trust you means we believe you have the right intentions toward us and that you are competent to do what we trust you to do’,28 but disagrees on what constitute ‘right intentions’. On his account, trust concerns encapsulated interests: you judge me to be trustworthy when you believe that I account for your interests as your interests, and vice versa. Our reasons for encapsulating others’ interests vary. Perhaps I want to maintain our relationship; maybe you value your reputation. It is not enough that our interests happen to coincide, however. Trustworthiness on this account concerns cooperation and reciprocity for mutual benefit, where the trusted pursue each other’s interests because they are each other’s interests.29 It is possible to rely without genuinely trusting on any of these accounts. We may find ourselves sometimes forced by circumstances to rely warily on those we suspect may be incompetent, careless, or potentially disingenuous; yet we rely anyway, as we might with a creaky bridge that is the only way forward. On any of these accounts, it is also possible to withhold trust without necessarily distrusting. I might withhold trust because I cannot ascertain whether the conditions hold for rational trust for this person, in these situations. Perhaps I’m not sure whether you care about my interests as my interests, in which case on Hardin’s account, I won’t trust you but I won’t distrust you either. On Jones’s account, I might see you as unresponsive to my counting on you because you don’t realize anyone is depending on you, so I won’t trust you, but this needn’t mean that I distrust you either. Those we deem to be insincere, incompetent, dismissive 25

20 21 22 23 24

Ibid: 119. Ibid: 124. Nelson 2005, op cit. note 14, p. 27. Nelson 2010, op. cit. note 14, p. 26. Baier op. cit. note 1, p. 235.

Ibid: 234. T. Govier. Dilemmas of Trust. Montreal: McGill-Queen’s University Press; 1998. 7. 27 K. Jones. Trust as an affective attitude. Ethics 1996; 107: 4–25, p. 4. 28 R. Hardin. Trust. New York: Polity Press; 2006. p. 17. 29 Ibid: 18–19. 26

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Trust and the Duty of Organ Donation of our interests and our values, or unmoved by the recognition that we depend on them – these are the people we distrust. Whether trusting, distrusting, or withholding is rational turns on the account of trust at hand, and it is not my intention to declare which account ought to be presumed as we reflect on trust in medicine and organ donation. I do think we can draw some implications well supported by multiple accounts, however, first among which is that there is not one right answer to the question, Should we trust healthcare systems? On all these accounts, rationally and morally justified trust turns on details about trusting persons, their beliefs about and interaction with trusted persons and institutions, and operative social contexts. Who is being asked to trust; whom are they being asked to trust? The answers to the each question can make a significant difference to the rationality of trust: we do not and should not trust or distrust all individuals, groups, and institutions just the same. It can be easy to ignore the question of who is being asked to trust whom, to proceed as though trustworthy people will be trustworthy for any potentially trusting person. This is especially tempting for trust extended to ourselves and those we trust: ‘How could they not trust us? We’re so trustworthy!’ Yet as feminist and social epistemologists remind us, differences in social locations can make a significant difference to the rationality of extending trust or distrust; our varied experiences, perspectives, and social identities underwrite varied assessments of others’ reliability, goodwill, and responsiveness in our interactions with them.30 Some of us trust modern health care more than others do; some of us are rational in our trusting, distrusting, or withholding trust as we do, while others of us trust more, less, or differently than we should. It is not my aim here to declare exactly whose trust is rational or irrational: as noted, our various social locations can greatly affect our abilities to make these assessments. Furthermore, for present purposes we do not require so finely grained an assessment; what matters is that personal and social histories provide many of us good reason to see doctors, nurses, other medical professionals, and healthcare systems overall as deserving our trust. We have good evidence of their competence and goodwill towards people like us; we rightly take them to be responsive when we’re counting on them; it is plausible for us to think they really care about our interests. By contrast, others of us are not so privileged to have personal and social histories that bolster rational trust. Instead, the evidence available warns that the healthcare

30

Cf. L. Code. Ecological thinking: The politics of epistemic location. New York: Oxford University Press; 2006; N. Daukas. Epistemic trust and social location. Episteme 2006; 3(1–2): 109–124.

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system puts greater weight on other peoples’ health, well-being, and rights than ours; that indifference or suspicion not good will is extended to us; that our interests are not encapsulated by the healthcare system, so while our interests might overlap with its aims they are not pursued because they are our interests. This puts it too strongly, meanwhile, for those for whom withholding both trust and distrust is rational, because they lack good reasons to believe one way or the other that healthcare systems encapsulate their interests, or that healthcare practitioners have or lack goodwill toward them, or that these systems and practitioners are or are not favorably responsive to their vulnerable dependence as patients. For those in this third group, the available evidence warrants neither trust nor distrust. Health care has an impressive track record demonstrating trustworthiness for many of us; yet this track record applies more straightforwardly for some patients than for others. Historical and persisting injustices and inequities in health care make up the track record of medical trustworthiness too, and these things are easier for some of us to overlook, or ignore, or never notice, than for others. Differential trust in health care in black and white communities in the United States, for instance, is well documented.31 Randall provides an especially comprehensive and damning summation of medical injustices against African Americans, from slave experiments to the infamous Tuskegee syphilis study to persisting racial health inequities.32 The differences extend to different perception of trustworthiness also. As King notes, for example, ‘52% of whites, but only 22% of African Americans, believe that whites and minorities receive equal quality of care’, and among physicians themselves, ‘29% of doctors say that the healthcare system “very often” or “somewhat often” treats people unfairly based on their race or ethnicity [. . . while] 77% of black physicians and 52% of Latino physicians say this unfair treatment occurs “very often” or “somewhat often”.’33 While it would be fallacious to treat these assessments as racially monolithic, these results are no less striking when properly understood. It can be inviting to urge one another not to dwell on morally heinous, ugly elements of medical social history, to remember not all doctors, nurses, or institutions are the same, and to see the progress made in public health

31

Cf. A. Dula & S. Goering. Eds. ‘It just ain’t fair’ The ethics of health care for African Americans. Westport CT: Praeger/Greenwood; 1994; L. Prograis & E. Pellegrino. Eds. African American Bioethics. Washington DC: Georgetown University Press; 2007. 32 V. Randall. Slavery, segregation, and racism: Trusting the health care system ain’t always easy! St. Louis University Public Law Review 1995–1996; 15: 191. 33 P. King. Race, equity, health policy, and the African American community. In Prograis & Pellegrino, op. cit. note 31, pp. 75–76.

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and social justice.34 Such arguments surely have a place: it can be frustrating to feel distrusted, to be associated with unjust decisions and events to which you were not party, and to be identified with people whose moral or social priorities contradict your own. Regarding rational trust and distrust, however, this analysis cuts both ways. Without systemic positive and negative track records to assess medical trustworthiness, non-expert patients must often withhold trust altogether.

5. TRUST AND OBLIGATORY DONATION Different rational attitudes of trust or distrust (or withholding either) in health care justify different rational attitudes toward the decision to donate one’s organs, which in turn are squarely relevant to bioethical arguments from fairness and easy rescue. This relevance can be obscured by a tendency in bioethics to consider cadaveric organs at procurement, when the wastefulness of refusal and harmlessness of donation seem glaringly obvious. But those arguing for a general duty to donate in death do not actually view procurement as the key point of moral evaluation: the dead have no duties. The obligatory act comes before procurement, in agreeing while alive to the harvest of one’s organs after death. So noted, I argue that it is rational to refuse to agree for another party to harvest one’s organs on condition of one’s death, given satisfaction of three conditions: (i) one realizes this party’s need for organs is immediately or persistently great, (ii) one recognizes that one’s life might be in their hands; and (iii) one does not trust them. To be clear, the three conditions are jointly sufficient, but not necessary, and the third condition covers distrust and also trust merely withheld. Trust becomes a live issue for cadaveric donation because doctors are responsible both for determination and diagnosis of death and for the removal and use of procured organs. When we confidently trust in organ-procurement and other medical practices of our society, indeed when we trust so confidently that the role of trust becomes tacit, voicing such concerns can seem paranoid. But without trust, what reason does a person have to dismiss the prospect that she will be facilitated or allowed to die, given that those to whom she has promised her organs in death are also those responsible for keeping her alive? This person need not believe this terrible scenario to be especially likely, only that it remains for her a live possibility. Let us appreciate here the moral and epistemic agency of those with reason to worry whether doctors, other practitioners, and healthcare institutions value the lives of people like them as much as others’ lives, given troubling coun34 Cf. H. McGary. Distrust, social justice, and health care. Mt Sinai J Med 1999; 66: 236–240.

tervailing evidence. One need not be incorrigibly convinced; for rational refusal to donate in death, it may be enough that the possibility cannot be dismissed. Disparities of race, renal failure, and kidney donation reflect these fraught realities in the US. It is striking that incidence of renal failure in black Americans with hypertension is seven times greater than in whites; that average wait for transplantation is nearly twice for black Americans what it is for whites; that black Americans are 12% of the population, 23% of kidney recipients, 30% of those on dialysis, and yet provide only 8% of all kidney donations.35 While no one factor fully accounts for relatively low black donation in the US, studies do consistently identify distrust of the medical community among reasons given.36 Race is one among several elements of our social identities; alone it is not fully determinate of the evidence and experiences that inform our trust assessments. Yet these demographic differences can be a powerful reminder that the question of rational trust in organ donation does not have a single answer. To be sure, there exist institutional policies and procedures aimed to build patient trust and to avert actions that would undermine trust. Possible financial conflicts of interest for transplant physicians can reasonably, rationally erode patient trust, for example. Routine disclosure of conflicts of interest and protocols for determination of death mandating use of external, independent clinicians can provide patients and their families better reason to trust the accuracy of negative diagnoses.37 Yet not all healthcare systems adopt the same policies and procedures nor equally ensure their efficacy across patient groups in specific donation and procurement programs. Prospective donors are ethically and epistemically warranted in attending to such procedural considerations in 35

Cf. C. Callender, L. Hall, C. Yeager, A. Wood Washington & P. Smith. The anatomy of a Black community-based transplant education program. In Dula & Goering, op. cit. note 31; Department of Health and Human Services. Annual Report of the U.S. Scientific Registry for Organ Procurement and Transplantation Network: 1988–1997. Richmond VA: United Network for Organ Sharing; 1999. 36 Cf. C. Callender & A. Washington. Organ tissue donation the problem! Education the solution! J Natl Med Assoc 1997; 89(10): 689– 693; L. Siminoff & C. Saunders Sturm. African-American reluctance to donate. Kennedy Inst Ethics Journal 2000; 10(1): 59–74; K. Jacob Arriola, J. Perryman & M. Doldren. Moving beyond attitudinal barriers. J Natl Med Assoc 2005; 97(3): 339–350; S. Morgan. Many facets of reluctance. J Natl Med Assoc 2006; 98(5): 695–703; W. Minniefield, J. Yang & P. Muti. Differences in attitudes toward organ donation among African Americans and whites in the United States. J Natl Med Assoc 2011; 93(10): 372–379. 37 Cf. Institute of Medicine. Non-heart-beating organ transplantation: Practice & protocols. Washington DC: National Academy Press; 2000; President’s Council on Bioethics. Controversies in the determination of death. 2008. bioethics.georgetown.edu/pcbe/reports/death [cited 2013 Dec 22]; World Medical Association. 2000. WMA statement on human organ donation and transplantation. http://www.wma.net/en/ 30publications/10policies/t7 [cited 2013 Dec 22].

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Trust and the Duty of Organ Donation deciding to agree or refuse to donate their organs upon death. Let us return to arguments against free-riding. It is plausible that some people who are organ takers but not organ givers do hold ‘uncharitable’ views, make moral exceptions of themselves, and hold themselves to different moral standards from others. To assume such condemnations apply to every taker-yet-not-giver, however, is to ignore the possibility of differential rational trust. Let us consider someone for whom it is rational to distrust their community’s healthcare system, and for this reason refrains from agreeing to donate upon death. Does moral consistency require her to refuse a transplant if she were to experience organ failure? It need not. She herself may rationally distrust, and yet recognize trust as rational for others differently situated than she. Those withholding trust in a healthcare system nevertheless might appreciate that other people could be rational to extend trust and thus rational in agreeing to donate their organs upon death. Let us return to Altman’s claim that failure to donate constitutes a contradiction of the will, such that cadaveric organ donation is morally required by Kantian bioethics. I agree that cadaveric donation is morally obligatory for many of us. Yet others have legitimate reasons to refuse to donate. Altman asserts, ‘Morally, there is no comparison between the value of saving a living being threatened with organ failure and the value of maintaining the physical integrity of a corpse’.38 I am inclined to agree with this, yet a dubious desire for a ‘whole’ corpse may not be what stops a person from consenting to donate: she may be protecting something indisputably more valuable in her own health and life. Agreeing to donate upon death may be rational for me as I have ample reason to trust in healthcare systems. The concern that being a donor in death can increase my risk of receiving subpar care is not a live worry for me. I do not have evidence that medical institutions treat me and people like me this way and considerably evidence to the contrary. Yet not everyone shares this social privilege. For this reason I resist the inference that failure to donate upon death must constitute a contradiction of the will. If we take seriously the moral agency of those refusing to agree to donate in the absence of rational trust, universalization of their maxim need not thwart their capacity to set and pursue their own ends, as the maxim need not preclude donation in the presence of rational trust. Contradiction of the will is thus avoided. What grounds a Kantian defense of a presumed consent organ procurement policy? Altman’s argument is that it facilitates doing our duty of cadaveric donation, and ‘encourages us to act in a way that is consistent with the value of

rational agency’.39 But if a trust-based critique is right, some people are not morally obligated to agree to donate in death given rational fears of how this could risk their own health or lives. For them, presumed-consent laws would not actually serve the stated Kantian purpose. Let us return finally to easy rescue. At this point it should be clear that, absent rational trust, a call to have one’s organs harvested on the condition of one’s death does not entail a general moral obligation to donate. For people who rationally distrust or withhold their trust, it would require risking something of significant value to them (Hester), something morally significant (Singer), something comparably moral important to lives potentially saved (Singer), and certainly not something virtually costless (Nelson). To be clear, it is not simply that people could be forgiven for failing to appreciate their duty to donate nor that we should refrain to blame them for failing to do their duty. For such people, rather, the duty of donation fails to follow on these arguments from easy rescue. As such, it fails to follow on these arguments as a general moral obligation as well. Some readers may worry that trust-based criticisms of arguments for a duty of organ donation are simply rationalizations, rhetorical cover for those who would have their cake and it eat too. Some might insist that refusal to donate by appeal to distrust or withheld trust is disingenuous. ‘You don’t truly distrust the healthcare system; you take medicine all the time! Just last week you went to the doctor! Heck, the fact that you’d get an organ transplant if you needed one shows that you trust modern medicine just fine.’ Actions can indeed betray one’s true commitments. Yet I think this sort of disingenuousness response neglects the key difference between trust and mere reliance. We might decide not to rely on someone we deem untrustworthy; but when desperate enough, when available options are scant enough, or bad enough, we may rely anyway without trusting. We will be wary, and keep searching for something better; yet if and when those on whom we have relied fail us, we may feel frustrated though not betrayed.40 This point about reliance without trust surely reflects how many people are forced to interact with social institutions and individuals despite serious reservations about their trustworthiness. It may be the best of an array of lousy options and so the rational choice, yet a far cry from really trusting. This, I suggest, is one way to appreciate the wary stance of many people accused of disingenuousness for relying on a healthcare system they profess not to trust. Some bioethicists arguing for a general duty of donation acknowledge something like differential trust, but deny that it undermines the general moral duty in

39 38

Altman op. cit. note 8, p. 104.

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Ibid: 109. Baier op. cit. note 1, p. 235.

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question. Hester, for instance, recognizes an important ‘practical matter’ warranting attention: However, one remaining practical matter concerns the very real existence of fear that organ procurement already occurs under questionable circumstance, and that the medical establishment supports the hastening of death in order to procure organs. Sociological research has already shown that such a fear exists within the current system. In particular, AfricanAmerican physicians have long argued that organ ‘conscription’ or even presumed consent policies would heighten an already complex attitude of distrust (cf. Jacob Arriola 2005) within the African American community towards medicine [. . .] The particularly strong moral stance of the previous argument could be seen as ratcheting up the conditions that lead to such fear all the more with the view that if organ removal is morally required, then coercive measures to ‘harvest’ organs might be more common, such as inappropriately withholding treatment in order to secure death sooner [. . .] The given argument provides careful moral reasoning concerning organ procurement; what must be taken up next is how such moral findings would be implemented given cultural conditions operative in the United States.41 Hester ultimately regards these fears as relevant to law and public policy implementation but irrelevant to the moral question itself. This elides, however, the central place of trust as an implicit premise in the argument from easy rescue. My suggestion is that for many people who refrain from agreeing to donate upon death because of their fears of receiving subpar care, these fears are certainly relevant to the ‘moral finding’ itself. Nelson directly engages the issue of differential trust in medicine and organ donation. Women, people of color, people with disabilities, homosexuals, and poor people have real reason to fear that ‘their interests are not reliably taken with due seriousness’, he argues, and yet there is ‘very little in the way of solid evidence that organ procurement systems [. . .] have preyed upon the vulnerable in this dramatic way’ of subpar care for purposes of organ harvesting.42 Where does that leave morally obligatory organ donation? It would be myopic to think we can wait for social-justice utopia before working to improve medicine and health care, Nelson warns, and naïve to regard the problem of trust as unique to organ donation. ‘In respect of its trustworthiness organ transplantation shares problems with health care as a whole, and it is health care as a whole that needs to address them.’43

41 42 43

Hester, op. cit. note 14, p. 26. Nelson 2010, op. cit. note 14, pp. 35–36. Ibid: 37.

In the difficult project of rebuilding medical trust and trustworthiness, it is critical that we not rush past the significance of historical or persistent injustice in a push to move on. In identifying the right places to rebuild trustworthiness in health care generally, this does not then displace the relevance of trust to the claim of morally obligatory organ donation. To insist that a general moral duty persists in the absence of rational trust, it seems to me, would be to obscure the sequence of trust lost, recognized, and regained.

6. CONCLUDING REMARKS Let us celebrate organ donation and transplantation as medical achievements enabled by the freedom fostered by trust and trustworthiness. Such achievements are no small thing. Trust can be easily lost, and trust regained is most difficult of all. As Garcia cautions, in arguing for the further development of a distinctively African American bioethics, ‘calls to trust the educated and professional have to be seen as aspirational until that trust is earned’.44 In this article I have criticized arguments for a general moral duty of organ donation, arguments sometimes used to advance presumed-consent or required-response policies that ‘nudge’45 us to do our duty. The upshot of a trust-based criticism is not that no one has a duty to donate; I think, in fact, that many of us do. Rather, it is that arguments for a general moral duty to donate organs tend to ignore and further marginalize those people for whom the trustworthiness of modern medicine is seriously contested. Acknowledging the legitimacy of rational distrust or withheld trust in medicine, and taking it as seriously as Dula46 and others have urged, requires a willingness to revisit our moral priorities on organ procurement. It means recognizing the work of cultivating medical trustworthiness across social-epistemic differences as a valuable bioethical achievement, not just savvy public relations. Let us not conclude that organ failure is morally unimportant. At its best, organ donation occurs within a social atmosphere of morally and rationally justified trust. If increasing organ donation is morally urgent, as it surely is, then cultivating trust in and trustworthiness of medicine for marginalized and exploited people is morally urgent too. Bioethicists can contribute 44

J. Garcia Revisiting African American perspectives on biomedical ethics. In Prograis & Pellegrino, op. cit. note 31, p. 5. 45 Cf. R. Thaler & C. Sunstein. Nudge. New Haven: Yale University Press; 2008; K. Whyte, E. Selinger, A. Caplan & J. Sadowski. Nudge, nudge or shove, shove. Am J Bioeth 2012; 12(2): 32–39; J. Bard. Lack of political will and public trust dooms presumed consent. Am J Bioeth 2012: 12(2): 44–46. 46 A. Dula. Bioethics: The need for a dialogue with African Americans. In Dula & Goering op. cit. note 31; A. Dula. Whitewashing Black health. In Prograis & Pellegrino, op. cit. note 31.

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Trust and the Duty of Organ Donation to this project of rebuilding medical trust and trustworthiness by engaging those who refrain from agreeing to donate with genuine openness rather than presumptive moral suspicion.

Acknowledgements This aticle has benefited from many conversations with students, friends, and colleagues. I am especially grateful to Asia Ferrin, Chris

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Partridge, Kristie Dotson, Kyle Whyte, Negin Almassi, Rebecca Thall, and an anonymous reviewer for this journal for their criticisms and suggestions. Any and all errors are mine alone. Ben Almassi is an assistant professor in the Humanities & Social Sciences Division at Governors State University in University Park, Illinois, where he teaches courses in medical ethics, science ethics, philosophy of science, and other areas of philosophy. His research interests tend to fall at the boundaries of social epistemology and practical ethics, particularly concerning issues of trust and expertise. He welcomes questions and criticisms at [email protected].